Volunteering is not often as fun as the pictures may depict. Giving your time and energy freely to a project is not always easy but the belief you have in it keeps you going. Thanks to all our volunteers Izzy Normenyo Norma Esi Kuofie @Linda Osafo @Diana Coffie. We appreciate you. We couldn’t have done this without you!

“I have been through so much that there isn’t much that scares me now. I have felt the most pain and pressure that I could feel and there’s nothing much left to be felt. I believe I can face anything because I live the life of a warrior…that I am” – Uduak Nwaozo

ABOUT UDUAK NWAOZO

I was born in a small city called Ilesha, in the Western part of Nigeria. My parents were educationists hence they were considered somewhat strict. I grew up with four siblings, I was the second of five kids; I lost two of my siblings in year 2000 and 2010 to Sickle Cell Disease (SCD).
My mum brought us up almost single handedly; my dad was often away. I was a little over a year when my mum discovered I had SCD.

LIVING WITH SCD

Living with SCD impacted my life in so many ways; both negatively and positively.

As a teenager I battled with quite a lot of stigmatization especially because I looked very different from my peers in secondary school. I had somewhat stunted growth, yellowish eyes and looked very fragile.

I learnt to talk to my mum a lot and she would in turn advise me to tell God about how I felt. My parents were very religious; so they instilled in my siblings and me the need to appreciate our spirituality. I guess this is a big part of what helped me through life as one living with SCD.

As an adult, living with SCD has also affected my relationships with people especially in relation to getting married . I have had quite unpleasant experiences with parents of supposed spouses because of course no one really wants his or her son to have a wife who might be ill most of the time.

Dealing with SCD as an adult has been better compared to my childhood and teenage years; at least I learnt how to manage my health better and I am more careful. Every now and then though, I have had to cancel appointments, cancel outing with friends, and deal with crisis, mood swings, and hospital sessions and so on.

I established good relationship with my medical team and I have always had an excellent support system from my family and the few friends I have.

FINDING HER VOICE ON SCD

I schooled in Ghana and during this period I tried to find myself. I felt something was missing. I wanted to say something to the public about SCD but I found myself always timid when it came to SCD issues but quite bold on other issues.

After I lost my only brother in year 2010 in Russia, I decided to finally talk more about SCD i.e. to create the awareness and educate people but I became more occupied with my job as a Project Manager which entailed a lot of travelling; I could not quite make time to plan strategies on how to go about my awareness creation.

I finally got the bombshell when my friend and colleague told me her 1 year old son had SCD. I remember feeling extremely guilty because she categorically told me she didn’t know anything about SCD and here was I refusing to dedicate time to talk about it with people. I eagerly decided to work on creating awareness; this is when I came up with the Sickle Cell Support Group – Ghana (SCSG-Ghana).

SICKLE CELL SUPPORT GROUP

SCSG is a registered not-for-profit organization and a social health group that was formed in 2014 with the aim of creating aggressive awareness about Sickle Cell Disease (SCD), its causes and prevention, and providing educative support to persons living with SCD for improved quality of life. SCSG-Ghana is meant to reach out to persons living with SCD in Ghana.

So far, SCSG-Ghana has organized the SCD Awareness march which was done in June 2016 in collaboration with Lister Hospital, Sunlodge Hotel, Green TV, Business and Financial Time, Special Ice drinks, Chicken republic, Ghana Police, Green FM ad Ovation International.

I was in the US having my surgery done at this point but I have a very effective team that handled everything. I wasn’t thrilled that I missed it but I had no choice. SCSG-Ghana also has an awareness video which can be watched on our site on www.scsgghana.org or directly on YouTube

I believe SCSG-Ghana will do its own little part to gradually break the barriers that SCD has created by educating people. It is important that everyone knows their genotype. I believe this is the first step in avoiding SCD. SCD is inherited from carrier or suffering parents who have the double AS genotype.

FOR PEOPLE WHOSE LOVED ONES LIVE WITH SCD

I am of the opinion that people living with SCD need all the love and attention they can get. If you are a sibling, spouse, parent or friend, the best you can do is to be very loving. We do not need pity.

Some people tend to pity you when they discover you are living with SCD; but with me once I see you pity me, I start to avoid you. Pity is the last thing I need from anyone.

FOR PEOPLE LIVING WITH SCD

People living with SCD also need an excellent medical team. With me, for instance, I bond very well with my medical team, they are a very integral part of my life. I don’t hide or keep anything from my doctors. They know everything about my health. I also try to keep away from anything that causes me stress especially if I have the power to avoid it. I stay hydrated and keep to my doctors’ appointments the best I can; and as mama often advised, I rest even before I even feel tired.

I think as persons living with SCD we should also be careful of the kind of things we consume. Our organs tend to get damaged easily hence the need to consume the right kinds of foods. I recently became a dialysis patient because my kidney packed up as a result of severe damages from SCD, going through frequent infections, crisis and so on. I also think there were many foods I consumed that might have led to damaging my kidneys i.e. weighing down and overworking the kidneys. So now I don’t only battle with SCD but also with end stage renal failure.

ON TURNING 35

I turned 35 years in November, 2016 and for me it was the greatest joy ever. People always say I lie about my age because of my looks but I don’t see why I should tamper with my age. I live each day thankful for all the experiences I have had. I have been able to visit so many African and European countries. I have stayed in the US for a while and I can go whenever I want to. I have had exciting experiences with my work, I have met and made very good friends and I have a very supportive immediate and extended family. I can only stay thankful because I am not better than anyone. Ultimately, I think the best attitude in life is to be thankful in spite of what we think we are going through.

Editor’s Note – Uduak is battling renal failure and needs your help to raise the funds for her treatment. Kindly support her on her journey to better health with your donations and your prayers. Please click here to donate –>gofundme.com/debbie-kidney

In desperate quest for a cure to my Sickle Cell Disease (SCD) some years ago, I stumbled on the bone marrow transplant as a solution to SCD; this method would usually involve chemotherapy at a stage. I imagined it would be a tortuously painful process. Somehow each time the thought crossed my mind, peace eluded me. I resolved to stick to living with the SCD instead of putting myself through unfamiliar stress or letting anyone gamble with my life. For me, SCD was enough gambling; a pain free week almost seemed like a luxury. I know each new day comes with its own blessings as well as hurdles to cross, so I remain thankful.

On 29th October, 2015, I received quite a number of text messages, emails and calls from family and friends, informing me, and somewhat congratulating me on the permanent cure for SCD without chemotherapy; an assumed less painful process using stem cells from a healthy sibling. I was amazed as I only received this much attention on my birthday so I guess it was another birthday for me; only, one I wasn’t too excited about. So far in my life, it seemed this was what I’d term, the best news ever; at least, at that moment, that’s how everyone made me feel.

Despite the massive excitements that filled the air, I was shocked at myself. All I had were mixed feelings. Instead of reveling in this new liberating information, my mind was flooded with questions whose answers I might never ponder long enough to find. Has this new method worked for anyone yet? How successful has it been? Is it life threatening? Will it bring about more complications in the end? What are its side effects? How serious will these be? How does one access the treatment? What is the estimated cost involved? What if there are no siblings whose stem cells can be used? Can any other person be a donor? As it is often done in our society, do the wealthy kids also come first if there has to be some kind of protocol for this treatment? When the stem cell transplant and the whole process is complete, the patient will have to be placed on some immunosuppressive medications for at least a year or even for life. These medications actually break down the efficacy of the immune system, rendering the patient susceptible to all forms of infections.

After giving this whole new process some thought, I decided to look at the bright side. With this new cure, SCD might be completely eradicated someday. It means SCD is not completely forgotten by the national, and even the international policy makers. It means we have people out there still fighting for a remedy to SCD. It means we can laugh heartily and genuinely someday, and live totally crisis-free. It means we should never throw in the towel, we need to fight on and keep on the faith because there is a breath of fresh air. I get excited when I think of the new process in this manner and I am resolved to keeping my hope alive. Yes, there might finally be a cure for SCD.

Life’s storms can hit you so hard you’d begin to wonder how you still making it through. I have lived my years as a Sickle Cell patient but in these genes, thankfully, I have had a relatively healthy period as compared to a few other patients I have met in my journey through life. As the bible says, there is time for everything; the worst storm of my life, began in March 2014 and has seemingly refused to calm down till now. I have never been excited to read d book of Job, in fact it is one book I often intentionally skip when I have to glance through the bible. However, lately I summoned up courage and began reading it.

But why Job? Yes, Job, because I have gotten to a point in life where I feel God is so far away from me, where I feel I am struggling to get Him to hear me, where I feel everything is literarily collapsing on me…these times I am tempted to sing “things fall apart” instead of “you are the pillar that holds my life”.

Today, I began asking myself some salient questions… Why is it so easy for me to praise God when things are going on well with me? Why do I expect Him to forget about His timing which is surely the best for me, and follow mine now so I feel no more pain? Why does my faith seem so strong when my heart is merry and melt when I see the mountain?

Now even in my pain, I am resolved to praise because only a God that’s mighty can boast of knowing me before I was formed in my mother’s womb…and He sure does! And that’s what holds my faith in Him.

I am allergic to pity so I don’t entertain it; I am not sorrowful, neither am I brooding. When I write these things, I simply hope and pray it is an encouragement to someone in stormy time like mine. I pray I am strengthened to keep praising Him instead of complaining. Am still wondering what you do with your pains?

On 3rd November, 2015, I received the most shocking news of my life. I sat there looking steadily at the Nephrologist as he told me I was at the end stage of a Chronic Kidney Disease (CKD). I couldn’t quite believe this because just the other day I was diagnosed with CKD, how come it is already at the end stage when there are five stages? I sat bewildered, tears welled up in my eyes as he offered me the very scanty options available for me to survive. As much as I tried to hold back the tears, I felt them streaming down my face, hot and very salty as they touched my lips. At this point, I had lost all of my faith, I could not think of anything. All I could think of was the seeming horror I had just discovered. I was drowned in fear. As I walked out of the clinic, I cried bitterly. I heard my friend’s voice like an echo, far away yet so close; saying, “Hold on Debbie, all will be well”. I couldn’t see how all was going to be well. For me, it was like the beginning of a journey of no return. Forgive me for sounding this pessimistic.

As we drove home, I called to inform my two sisters and my mum of the sad yet important news and of course they began informing family and friends; everyone they could possibly talk to at that time. Everyone who had not touched base with me in years began to reach out somehow; so many calls, texts, emails etc. Interestingly, everyone seemed to have a preferred solution to my latest challenge; both medically, spiritually, psychologically, physically and every way I could imagine. Everyone wanted to be there for me. Some even took it upon themselves to call me every day for prayers. I was simply overwhelmed with care. All of these, I sincerely appreciate.

After the stage of shock, I got to the acceptance stage. It then occurred to me that I had spoken to every other person except one, my creator, The One who formed me and knew me perfectly well. I felt all the more depressed. I dint know where to start from. I was very embarrassed. I was sorry and sad that I had to speak to Him last. Yes, He should have been the very first. I remembered some of my childhood Sunday school teachings, “those who call on Him will be saved”; “He is my present help in times of trouble”. Mama often told us, “He always listens, so just call Him and have faith”. So I summoned up the courage. I cried, I prayed, I reminded Him of some of His words which I knew, and had kept safe in my heart for trying times like this. I didn’t still get a feedback from Him after all these, but deep within me, I know He heard me, He always did. I thought about other times in my life when I needed Him, and He showed up for me; so I know He won’t leave me now. I have that inner peace.

At this point, living with both Sickle Cell Disease (SCD) and CKD, doesn’t matter anymore. I just don’t want to brood over what the doctors have to say about my life and miss the fun times I can still have. I am done fretting, though I feel some inner fear every now and then, especially when there is a strange pain, prolonged flu, bloated tommy or an extremely depressed feeling. For me, waking up every day means that God has not finished with me. Despite all the pain and discomfort, I am thankful for life. I am taking one day at a time and finally growing to accept that whatever you believe and constantly process in your mind, is what truly works for you so I am staying positive. I often feel that I am holding on to my last drop of faith but who knows, that is just the drop of faith I need to see me through. If you are reading this, please say a little prayer for me 🙂